April 19

This week was about a year long. I have often felt entirely out of any energy or ideas to deal with Sarah’s fighting me/whining/yelling and Amy’s rigidity regarding cheer practice or gymnastics (all her ideas but with no room for Sarah to be herself). When Sarah starts her usual ways of protesting or pushing, I feel my energy drop into the lower half of me, as if I am half as tall as I was a nanosecond before. I have often found my way to the kitchen floor as my spot for giving up. Many friends kindly chimed in to tell me to be nicer to myself and lower my standards for myself and my parenting. I appreciate that reminder immensely. However, I don’t think that is the problem here. I think it is that I have kids (mostly Sarah) who are being rigid and whiney and yelling and not listening to me or they are listening carefully and doing exactly the opposite of what I say (eg spitting, fake laughing while blowing snot into the air, tossing colored pencils up repeatedly so they fall on the floor and the points break off, barging past me to get to the dryer to get an item of clothing that is somehow crucial at that moment). There was also Sarah’s party at 3am Thursday night, lights on, reading a book out loud at full volume, then coming to plead with me to help her find her book that was sitting in the middle of her bed, then needing her Gymkhana t-shirt that then had to be put in the dryer because it had been drying on the clothing rack and was still damp, then wanting someone to snuggle with her. I know there is a lot to be said for my own perspective and that I can control myself, blah blah crap crap craptastic crap. I know I am not the only parent reaching this limit. Another mom coined the term SeeSaw Rage about our frustrations over the app Amy’s school is using. More than usual I feel like I cannot hear one more utensil clatter to the floor or have one more person climb on me or I will scream. On the one hand the girls are amazing and sweet and doing things to melt my heart and on the other hand AAAAAAAAAAAAAAHHHHHHHHHHH!!!!!!!!!!! (A huge thanks to Carl for managing so much of the weekend so I can be in a quiet room by myself.)

The things that melt the heart…

 Sarah drawing musical notes on her white board while quietly listening to music in the family room. 

The girls piling onto me with hugs and kisses when I was crying because of being mistaken about when Sarah had a zoom meeting (I thought she had one. She didn’t. I felt foolish and that was the straw to break this camel). 

Amy hugging me so hard when I suggested a bakery gift for her best friend’s family, as if the gift was for Amy. 

Amy making her bed and being so independent with many aspects of her day. 

The girls playing together easily and happily.

Sarah watching Mr. Greg Reads each morning and following along with her own book and talking to him as if he was here, wanting to tell him about the weather or the patterns she sees or that she loves the book. It is beyond adorable. In fact, possibly making up for any difficult thing she has ever done in her entire life, yesterday Sarah wanted to make a recording of Ms. Sarah Reads. So Carl recorded her and it is so adorable. If you are a friend of ours and would like the link to see her in action, let me know.

Starting on Monday Sarah will have one zoom meeting per day with her teacher. This will either be amazing and the best change ever or this will make things even harder and we will have to abstain. Fingers crossed.

Some of the upsets this week were about Sarah desperately wanting a nightgown of Amy’s that has hedgehogs on it. Sarah is a blend of intense rigidity and surprising flexibility and those can coincide in a single moment. The hedgehogs were a must, but then Sarah was fine with using Carl’s old white t-shirt that Amy decorated with hedgehog drawings. The new creation is not at all like Amy’s nightgown except that it has hedgehogs, but somehow this is better than any other item of clothing that Sarah has, better even than her rainbow nightgown made in the same style as Amy’s nightgown.

I can be an odd mix of things too. I am simultaneously so tired of this current state of things and I am scared of the world opening up again. It’s not even the fear of any of us getting sick; that would be a separate fear. It is just a fear of needing to get people places on time and being my organized self from before. I realize I am organized now and that things aren’t any less stressful, but somehow there is still a fear of not knowing how to do my previous life anymore. 

On Tuesday I was part of a podcast called A Valid Podcast. In order to carve out a space that I could almost guarantee would be quiet and I would be undisturbed, I sat in my car. I was a bit cold and a bit nervous, but doing some Alexander Technique thinking helped and knowing that some family and friends were listening in real time also helped. Overall I think it went quite well and I even sounded like myself. My friend who runs the podcast and Unabridged Press is amazing and has such room in her heart, head, and being to think about people with various different abilities. She brings a professional vision and thoughtful perspective to all that she creates. I am honored to be part of her creation to expand awareness around living with disabilities. If you would like to listen, I come on after about 11 minutes.

Lots of love to all of you. Thank you for your love and support.